Nine-year-old Whitney Weldon was on her family's annual Colorado ski vacation when she began experiencing terrible pain in her neck. She noticed a lump that grew continuously throughout the trip. When the family returned home, Whitney was taken to the emergency room. A CAT scan revealed a piece of bone that was cracked like a car windshield and had completely separated from her neck. Whitney was referred to Dr. Frederick Kaplan, a scientist who studies an extremely rare connective tissue disorder called Fibrodysplasia Ossificans Progressiva (FOP).

On April 3, 2001, the Weldons' worst fears came true; doctors confirmed FOP, a genetic disorder characterized by the abnormal growth of bone in soft tissue. FOP is the only known condition where one organ can transform into another--where muscles, tissues, and ligaments change into bone. The disease, generally diagnosed in childhood, progressively disables the body as the new bone fuses together joints and creates immobility.

Since her diagnosis, Whitney has already faced a number of physical changes that greatly affect her young life. She can no longer lift her arms up or bend down easily. Her right elbow is in a locked position. She has only limited movement in her neck and a bony back. She needs assistance with dressing and combing her hair. Though her body is slowly failing her, she never complains. Whitney's FOP prohibits her participation in most physical activities, not only due to the rigidity of her body, but because trauma can cause more tissue to ossify (turn into bone), thus worsening her condition. Yet, the happy-go-lucky little girl who once enjoyed numerous sports, swimming in the ocean, and playing the trumpet has not lost her beautiful smile, her witty sense of humor, or her determination to succeed with every new adaptation. She laments the loss of each activity, but always picks herself up to face the next challenge.

There is currently no known treatment or cure for FOP and only about 450 confirmed cases of FOP exist worldwide. Attempts to remove the excess bone result in even more robust bone formation. Because there are so few known patients, FOP children and their families have very few options. Because FOP may manifest itself differently in patients, there is no single protocol of care or treatment. With little knowledge about FOP currently available within the medical field, misdiagnosis is common, resulting in mistreatment that can be catastrophic and lead to progression of the disease. The future of FOP treatment depends on basic scientific research to identify the genetics of the disease and its process, thus enabling scientists and physicians to devise effective treatments and eventually find a cure.

There is a tremendous need for funding into FOP research. Currently, 90 percent of all funding that supports FOP research is independently raised by 12 to 15 families across the globe. The Weldon family has been extremely active in the fight against FOP. Through their Weldon FOP Research Fund (www.weldonfop.org), the family has raised money for the FOP Laboratory at the University of Pennsylvania School of Medicine and become prominent advocates in the musculoskeletal community. Mrs. Weldon explains that families who are not able to raise funds and people across the globe who have FOP depend on the University of Pennsylvania to find a treatment--it is their ONLY hope.

In fact, one hopeful note was sounded recently. Researchers at the University, led by Eileen Shore, PhD, and Fred Kaplan, MD, announced that they have located the genetic key which, when damaged, causes the body's skeletal muscles and soft connective tissue to undergo the metamorphosis into bone. Visit http://www.usbjd.org/rd/?FOPhttp://www.usbjd.org/rd/?FOP (http://www.usbjd.org/rd/?FOP) to learn more.

Legislative support to increase federal funding for musculoskeletal research is crucial to children with FOP, and also to millions of others who suffer from bone disorders and diseases. Although FOP research aims to assist patients affected by this devastating disease, the knowledge gained will support discoveries and treatments for osteoporosis and other bone ailments.